When breast cancer strikes young women, they face critically important concerns unique to their age.

Will I be able to have children? What about the esthetics of reconstruction surgery? Will my hair grow back before the wedding? Will I have to drop out of school? Move back with my parents? Sometimes they are young mothers themselves and don’t have the strength to hold their toddlers following surgery.

Breast cancer among young women is relatively rare, roughly five per cent of all new cases, according to the Canadian Breast Cancer Foundation, but it can be more aggressive, difficult to treat and prognosis is not great.

It was once considered a disease of older women, but experts suggest it’s the leading cause of cancer death in women under age 40.

The disease should be treated differently than in older women, said the Foundation and the government-funded Canadian Institutes of Health, which recently provided $5.7 million to create a national network of breast cancer researchers at 28 sites across Canada to investigate breast cancer in young women. The study will look at 1,200 women, newly diagnosed with any stage of breast cancer before age 40.

Such an initiative is necessary as young adults with cancer tend to feel isolated, said Cathy Ammendolea of the Canadian Breast Cancer Network, a patient-driven advocacy group, which is not involved in the study.

“They are outside of the standard when they’re diagnosed. Their cancers are far more aggressive for the most part. And the psychological impact ... it’s not that it’s worse, but it’s different when you’re juggling a small family,” she said. “And if they’re really young, there’s the issue of fertility.”

The research will look at the biology of breast cancer and optimum treatment to improve clinical outcomes, survival and quality of life.

Those who work with young adults say the reality of cancer is awful at any age, but in the very young it can be heartbreaking. Recognizing that youth have their own needs and concerns, such as the effect on body-image, fertility and finances, the Jewish General Hospital started a small young-adults support group nearly 30 years ago as part of its Hope and Cope Wellness Centre. It’s greatly concerned with the impact of breast cancer on women age 18 to 39, and is running a study on whether exercise will mitigate the negative effects of radiation on chest muscles. It’s also looking at the effect of premature menopause, caused by treatment, on bone density.

The disease comes at a critical moment in their lives, said program coordinator Emily Drake. They’re about to get married or launch a family, their studies or careers, and everything has to be put on hold for surgery, radiation and chemotherapy, Drake said.

Treatment takes a huge chunk out of their lives, she added.

Many young couples’ relationships, which aren’t on solid ground, don’t survive the illness, said Marize Ibrahim, a physiotherapist with the Hope-and-Cope ActivOnco program, an exercise and rehabilitation service for cancer patients during and after cancer treatment.

Some patients refuse treatment for body-image reasons, Ibrahim said. They shun surgery and chemotherapy because they (mistakenly) think they can conquer the disease on their own using homeopathic or natural substances, Ibrahim said.

“We have wonderful wigs, but many young people refuse treatment — and unfortunately some died.”

Therapy can cause premature menopause or fertility problems, she said. “That might be okay if you’re 60 and you’ve already had children, but a 30-year-old with menopause and old bones. ... It’s something a 30-year-old should not have to face.”

Getting young adults to comply with treatment can be an issue, she added.

Some women postpone their wedding date until their hair grows back. But they often must take anti-cancer drugs for five years. Some will stop (against doctor’s orders) to start a family. It’s not that they’re not aware that the cancer may come back, she said, but the women say, “I just got married and I want to have a baby.”

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